My life may be short, but it does not lack grace. I may be young, but my story does not lack mercy. Being adopted, there is a life that I could have had and a life that I now lead. The life that I could have had may not be a painting of a beautiful sunset, but reality would have been its painter that dipped into the colors of bad mistakes. My life-giving mother searched to fill a void with only things of the temporary—I was born with fetal alcohol syndrome, but God said, “I have something bigger for you.” From the concrete jungle of East St. Louis, to the grassy fields of Travis Brothers’ Farm, I transitioned. I have struggled, but my invisible disability taught me lessons I may not have learned any other way, when questions of, “Why?” arise, God says, “I am bigger than your disability, and I have something bigger for you!” Addicted to alcohol and cocaine at birth may have created problems that others do not understand, but for me, it has set a path, a journey, and I will always strive to tell my story of grace for the precious little ones day after day, until God says, “Come home. I have something bigger for you.”
The above words are words I wrote over 10 years ago, and they likely mean more to me now than they did then. I have had the privilege of witnessing that “something bigger” ripen as I continue to walk this journey. I have had the opportunity to step up to the platform, both literally and figuratively, for the past 15 years, walking alongside individuals such as myself as we work to mitigate stigma and shame and cultivate inclusion. Ever since I wrote that spoken word that I so often implement, I have seen this momentum shift from FASD being perceived as strictly a childhood, brain-based diagnosis with a negative prognosis to now, we adults are being included, welcomed at the table of ideas, seen as more than “disabled” and full of strengths that can change the atmosphere for the better. I have helped to push the research away from childhood-behavior-focused, to life-long-whole-body (and whole-person) centered. I went from getting behind a podium receiving encouragement from my “FASD Heroes” to now I am lighting the fire in the next generation as they feel more empowered than ever to embrace their diagnosis and shout their strengths. This momentum, I am encouraged, is just getting started.
Those of us with a diagnosis are more than our diagnosis.
Undoubtedly, our diagnosis is a part of who we are, but it is not who we are.
My essence is more than my diagnosis. It is more than my credentials. It is even more than my story. If we see others as more than “marketable pieces” needed to increase the value of our assets, (or even broken pieces unable to be used) and as a whole person, then our potential can be fully expected, fully engaged, and we can fully live!
With a passion to empower, Emily has used her voice for 15 years to educate and advocate on behalf of fetal alcohol spectrum disorders (FASD).
